by Dr. Robin McGee, CKN Patient Advocacy Editor
Georgia Hurst had a life before advocacy. She was a fit, active mother, putting the finishing touches on her Master’s thesis in Post-War II American History at Northwestern when she learned her brother had been diagnosed with colon cancer at 48. Several years before, they lost an older brother to colon cancer at 36. This early-onset pattern prompted healthcare providers to suggest she be tested for Lynch syndrome (Ls), an autosomal dominant genetic condition which strongly predisposes one to endometrial and colorectal cancer, and various other cancers. She tested positive, and her world changed.
Like many advocates, her advocacy efforts arose out of her own suffering and fight for adequate care and not being able to find helpful information. Within weeks of learning she had Ls, she underwent the recommended prophylactic hysterectomy and oophorectomy for her particular mutation. The consequences were devastating. Only 40 at the time, she was catapulted into surgical menopause with brutal unrelenting symptoms of nausea, migraines, and had fallen into major depression. Doctors told her that it was “all in her head.” After much research, striving, and persistence, Georgia fought for and found an expert on Ls at Mayo Clinic. She finally acquired appropriate care and surveillance.
But finding her own solution was not enough – her compassion extended to others who were similarly deprived. She learned that only 30% of Ls patients were getting appropriate screening. Frustrated by the misinformation that surrounded the condition, the ignorance of the medical community about Lynch syndrome at that time, and not finding any websites willing to discuss the gravity of such a diagnosis, she resolved to blog about it. “I wanted to give previvors a voice,” she remembers. “So often, we are patronized by others who say, ‘you should feel lucky not to have cancer.’ But our condition comes with painful personal loss – the death of loved ones, the loss of body parts, the constant dread, and having to worry about passing this mutation onto one’s children.” She wanted to bring attention to the familial, social, and emotional consequences of Ls, knowing that only a fellow patient can do so.
So she began a blog called ihavelynchsyndrome.com.
Her posts prompted an immediate response from others desperate for connection and information. “I wanted to create what I wished had been there for me,” she recalls. Within weeks, she was contacted by a genetic counsellor, from the University of California in San Francisco Medical Center, who asked her to keep writing; no one else was willing to talk about the emotional gravity and uncertainty of Ls, or about what these risk-reducing surgeries entail. Soon other invitations for writing followed. Capitalizing on her talent as a writer, she was soon writing for medical journals, guest blogs, patient education forums, etc. She became a resource for those desperate for guidance. “People reach out to me every day.” After a few years of writing, her blog evolved and ihavelynchsyndrome.com became a non-profit last year.
Georgia expanded her reading about Ls and about hereditary cancer in general. Like many advocates, her increasing medical literacy also increased her sense of connection and parallels with other previvors. On Twitter, she met Amy Byer Shainman (@BRCAresponder), a woman with the BRCA1 mutation. The two of them became close friends as they shared similar experiences following their prophylactic oophorectomies. They decided to start their own tweet chat and wanted to bring an expert onboard to ensure they were providing their audience with accurate, cutting-edge information on the various topics surrounding hereditary cancer syndromes. So they sought out the best — Ellen Matloff (@MyGeneCounsel), MS, CGC. Ellen is the President and CEO of My Gene Counsel. Ellen is also the founder and former director of the Cancer Genetic Counseling Program at Yale School of Medicine and was a lead plaintiff in the BRCA gene-patent case against Myriad Genetics that went before the Supreme Court in 2013. In a unanimous decision, the Supreme Court sided with Matloff and concluded that genes cannot be patented.
What followed was a burgeoning of expert and patient attention. Top experts joined the chats (#Hcchat which has now evolved into #GenCSM @GenC_SM), adding credibility and power to their initiative to become a reliable source of information. Their most recent chat with Dr. Vince DeVita, The Director of the National Cancer Institute from 1980 to 1988, discussed Vice President Biden’s Moonshot Initiative. The #Hcchat’s Moonshot chat received close to 7 million impressions on Twitter within a few hours that day.
Of course, she receives oceans of positive feedback from those she has personally guided and helped survive with Ls related cancers. What motivates her? “My personal experience of losing my mother as a child and losing my brother fuels my efforts,” she said. “My brother left behind a baby when he died. I do not want any child to lose their parent to this syndrome.” She also derives tremendous satisfaction from the wholehearted support of prestigious medical experts. “Having Ellen Matloff and Dr. Muin Khoury, the founding director of the CDC’s Office of Public Health Genomics, supporting my advocacy efforts is the best currency in the world.”
Georgia has advice for those embarking on advocacy. “Know your facts,” she recommends, “learn everything you can about your advocacy topic. Advocacy will arise out of the strengths and interests of the advocate – there is no one size fits all.” Patients can recognize the complexities of the cancer and previvor experience in a way that healthcare providers may not. She advises that we reach beyond our own stories and to see the interconnectivity between hereditary cancers, and take a creative, literate, and determined stance. “Read a lot from reputable sources and make connections with others in the hereditary cancer realm; we all have a great deal to learn from each other. Just like Albert Einstein, ‘the more I learn, the more I realize how much I don’t know.’”
Georgia can be reached via Twitter at @ShewithLynch and via her website ihavelynchsyndrome.com.
Dr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 30 years. She has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage. Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers . Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015. Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo. She is currently in treatment for a recurrence of her colorectal cancer.